Bedbound Abigail is life-limited and suffers respiratory issues. She is constantly ventilated and suffers from epilepsy. She also has a movement disorder.

Missing her appointment on Wednesday is just the latest in a litany of errors and mishaps that has left her family feeling the system is letting Abigail down.

Dad Stephen (37) explained that Abigail had an appointment on Wednesday morning with her neurologist at the Royal Belfast Hospital for Sick Children.

It was an important meeting to discuss Abigail’s medication which requires adjustment as she grows. Steven and mum Jane (21) said their daughter also had an appointment at the ward Abigail has attended since birth for a respiratory procedure.

Their GP had booked an appointment for Patient Transport, supplied by the NI Ambulance Service, which was due to arrive between 8-9am.

However, on Wednesday morning the GP surgery called to say the transport would not be available at 9am but assured the family that they would arrive in time so Abigail would not miss her appointment.

Based on this the family called the hospital who extended the appointment until 10am. But the transport didn’t arrive until 9.40am. “That obviously was far too late. Plus they had a lot of other patients inside.

“I explained to the staff that Abigail would be accompanied by myself and her mum plus all her equipment. However, they said that only one parent could go. I further explained that due to Abigail’s extensive disabilities, it would take more than one parent to help transport her. This is a two-parent job. Even if I was to take Abigail on my own there wouldn’t have been enough room for her equipment,” said Stephen.

“I called ambulance control for an explanation and the response was that, if I had a problem, to put it in writing.”

Stephen said that if they had known in advance they may have been able to organise some form of transport but at that late stage it was impossible.

When he contacted the hospital the appointment was deferred until February 21.

“This child is suffering and now we have to suffer with her until then. At the minute she is up at 3am every morning as that is when her medication runs out,” he said.

Stephen said they are in despair as everything they need for little Abigail ends up as a problem. “There is always a fight to get it,” he said.

“The only people who are supporting us, and there is a lot of input from a lot of services, are the Lurgan Community Children’s Nursing Team. Only for them, we would be really in trouble. They try to accommodate Abigail in every way they can. If they can do something to help Abigail, it’s done,” said Stephen. “It is them and the grandparents who are helping.”

“We have been let down by all the services,” he said.

“We did get a new respiratory consultant. She has been the only one apart from our consultant in Craigavon who has been reasonably straight with us. We don’t ask for a miracle. We don’t ask for anything unreasonable. be straight with us, no matter how bad it is.”

Such has been the confusion with various sectors of Abigail’s care, her consultant has set up a ‘communications book’ so everyone is aware of what is going on.

“Abigail has been given a very bad prognosis. She has a limited life-span, how limited they can’t say. At her last monthly meeting her consultant said that they feared for Abigail this winter. As long as Abigail’s fighting we are fighting for her. She has a lot of fight left in her. So far she has proven she has the fight,” said Stephen.

“Abigail, who has a one-year-old sister Amber, has spent about 90 percent of her life in hospital.

“We put in for a house for Abigail when she was first born. That’s over two years ago. She lives in the living room in her special cot. I have to carry her up the stairs at night. I told the nurses this morning that I nearly dropped her going up the stairs because she jerked with her muscle spasms. I have to carry her and a ventilator up the stairs every night. It’s a lot to carry. We are living in fear of dropping her.

“We have put ourselves into about £10,000 worth of debt travelling to and from hospitals. We have had to give up work. We have had to give up everything. Abigail could be in hospital for 13 weeks at a time and for us to travel there, it’s £27 a day before you put a bite in your mouth. Seven days a week, that’s a lot of money.”

He said one reason some agencies can’t help financially is that Abigail hasn’t been officially diagnosed. They are currently awaiting genetic tests.

The NI Ambulance Service was asked for a comment but none was received at the time of going to press.